The more I am emptied, the more I am filled. What a weekend it was. We ended up with about 30 lemonade stands going up in 13 states, which far surpassed my expectations when I started Write With Light Project. As if that wasn’t enough, we had unexpected news coverage at at least 4 of our stands (click here to see), and the amount you all have raised for this has already passed my initial goal. I don’t have a final total yet, but when I…
Read MoreTo avoid any unnecessary drama, I'd like to preface this post with the following sentence: I do NOT have cancer.
We spent most of Tuesday at Texas Children's, and most of Wednesday at MD Anderson.
Medical updates first:
Sunley gets to be DONE with her fluid restriction! We are so happy to not have to measure every single liquid, as this has included things like ice cream, spaghetti sauce, smoothies, and Sunley's favorite: Pho. Her chest x-ray was clear, and her echo looked good. She developed some collaterals about 3 weeks post op that are still there, around her descending aorta, but they are not currently causing any issues that we can see.
Read MoreWe have been home for nearly 2 weeks now! About 10 days or so before we left, I had a really out-of-the-blue opportunity to speak with Lauren Simonetti from Fox News on her podcast, “We’re Momming Today” about the nonprofit and about Sunley’s story (Link here, if you’d like to listen). Trying to condense my thoughts into 20 minutes was hard for me (if you know me then you know I can talk forever), but the whole experience was amazing. The fact that a New York reporter from Fox News would take the time to do that with me just absolutely blew my mind. I’m a stay at home, homeschooling mom of four — I do not have time to start a nonprofit, but I did it because I just knew I needed to lay some groundwork for God to do what He wants to do with this. And already, look what has happened! We have over 30 lemonade stands going up in 13 states now, we’ve sold hundreds of t-shirts and raised thousands of dollars to support a clinic that didn’t even exist 5 years ago. When will I stop forgetting to just let God take the lead? When amazing things like this happen, it makes me wonder how in the world I ever fall into old patterns of control and frustration. But we all do it. Thank goodness for fresh starts.
Read MoreWe've been in Houston for a month now, and as much as I would love to keep the slow, focused pace that we have here, we are all definitely ready to go home. Sunley had a checkup with her cardiologist this week, and it went well. Her oxygen saturations seem to have leveled at 96-97 which is great, and she's starting to gain back some weight after losing a bit during the hospital stay. She still looks super skinny to me, but I'm sure with time everything will come back. She's running and dancing again, and it's pretty much the most beautiful thing ever.
Read MoreI think I'm long overdue for a recap on Sunley's condition, and what exactly this Fontan procedure did for her – and what it means for her health in the future. The surgeries she has had are called “palliative.” That means that none of these cured or will cure her heart condition. No one has ever been able to give us a very accurate prognosis for her because there is very little data
Read MoreSweet new heart momma, I know. I know this is not the Mother's Day you wanted, because I too have spent this special day watching my newborn baby struggle to breathe. I know the weight of the diagnosis you've received is overwhelming because I too have been overwhelmed. I know the sounds your voice will make as you grieve because I have made them, and I know the way your whole body will shake because I have shaken.
Read MoreWe have been out of the hospital for almost a week now, and have found some weird version of normal – somewhere between a medical crisis and a vacation. Sunley's personality is returning to us more and more each day, as is her energy and her weight. She's already gained back just under one pound after losing 2-3, I think, in the hospital. She is singing in the car, and today at her follow-up she was talking the nurse's ears off! Don't get me wrong, the trauma is there – the word "noodle" will probably forever be a trigger for her – but she is still my Sunley, now with a few more story-telling battle wounds. I think you could say the same for Derek and me, although our scars are less visible.
Read MoreWe were dreading the process of getting discharged yesterday, but it actually went very smoothly! The morning started with a roller coaster. Our PA on the floor that day (actually a friend of one of my old high school buddies!) came in and told us that her potassium was actually lower, so we knew that likely meant at least another day in the hospital. We had a big, long discussion about it — the benefits and risks of going home with low potassium. A few minutes after he left, he came right back in to tell us that the results we were looking at just hadn’t been updated yet with morning bloodwork! Potassium was in normal range! Back to our plan. The only thing that would keep us in at that point would be a bad X-ray. Later that day, we got our good X-ray and clearance to go home!
Read More“You are so lucky you aren’t single ventricle, because those kids have such low quality of life, and honestly, if you were single ventricle, I’d have to tell you to expect to bury her by age five.” This is what a doctor in Dallas said to me after misdiagnosing Sunley (she thought Sunley was biventricular with DORV and mitral atresia) while I was pregnant. She called two days later, crying, and telling me that actually Sunley is single ventricle.
Read MoreSunley has a very small pleural effusion in her right lung, and a minor pneumothorax (like, tiny) in her left side, but neither of those things should keep us in the hospital unless they get worse, which no one expects. We will be going home on a pretty aggressive regimen of three different diuretics, potassium, aspirin, and pepcid for her tummy, as well as sticking to our fluid restriction of 770 cc for the next 4 weeks at least.
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